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  1. In December, I posted about the tremendous benefit I recieved to one of my worst symptoms, chest pain, through self massage of the chest. 4 months later, I wanted to post an update that the improvements to the chest pain have maintained and are perhaps even better than in December I have also found a great benefit in massaging other areas. I have had success with some symptoms of orthostatic intolerance ("scalp tingling," funny head feelings) via massaging the muscles of the head and leg shaking via massaging various muscles on the legs. This has probably been one of the best treatments I have found in terms of benefit and of course cost/side effects! As far as my method, I search for sore areas on the muscle and then massage these areas only for just a few seconds at a time, but like a dozen times a day. Results seem to take days to weeks. I have found that it helps to experiment putting the target muscles in different positions until finding the best positioning in which to massage. For example I found I had to open my jaw fairly wide and let it relax to massage one spot near my ears. I often don't even notice the muscles are sore until I try to massage, which is why it took so long to figure this out. I.e. my legs felt shaky but not that achey. Since others don't seem to have had such a profound response to massage, I wonder if I just have some abnormal pathophysiology behind my illness. Anyway, I hope this helps someone. As a disclaimer I have no expertise in this area and am just sharing my experiences. Massage can probably be dangerous if done wrong? So exercise caution
  2. My experiences with eye achiness and head muscle achiness is quite similar. Quite debilitating symptoms. For the head achiness, I have found self-massaging the achey muscles has helped tremendously. Multiple times a day, but massaging each place only 10 seconds or so. In my experience this takes some time to work, days to weeks. Specifically all over the temporalis, frontalis, occipitalis, even some muscles in area right behind ears. This is just my experience though. I find the eye achiness gets worse with allergies. I find reading small print is particularly bad, and I have my browser, etc configured so everything is large print, which helps a fair amount.
  3. Maybe it is the sternocleidomastoid muscle When you say under your jaw, do you mean at the side of your head? or more towards where the adams apple is located. Sternocleidomastoid I think runs more to the side. I have had possibly similar issues. Massaging it helps me, but you want to be careful as there is a lot of "stuff" around there like blood vessels.
  4. I find heating my core, with an electric heat pad, helps (even though it is my legs that are often shaking) (I don't feel cold, but the heat still helps) Also, I find that the muscles that are shaking are often quite sore and if I massage them the shaking improves. The massaging can take a bit of time to work. Also it seems to need repetition. So I might massage 15seconds, and 5m later do the same, etc etc.
  5. I would love to know more about less common treatments. Maybe things that work really really well but for a minority of patients.
  6. For me muscular overuse triggers symptoms, so I only massage like 30 seconds at a time as the massaging itself can be quite straining, but I do it a lot over the course of the day, like a dozen times or so. That actually seems to work! I don't know the specifics of your other health problems but maybe that is helpful info
  7. @POTSAly Are you 100% sure it is pressure inside your head? Maybe it is muscle tension in the muscles around your head and neck? I used to get bad headaches until I started to massage my temples, as I describe in the following post.
  8. I have tried prazosin (an alpha 1 blocker) It helped with my normally very cold hands and I think I felt a little better overall But I had worse GI symptoms and fatigue (maybe due to the GI symptoms?) Another thing to note is that, at least for me, when I discontinued the prazosin I had some mild "withdrawal" effects, or maybe just a coincidental flare up in symptoms.
  9. Here is a study that supports the use of oral rehydration solution (ORS) in POTS https://pubmed.ncbi.nlm.nih.gov/31405524/
  10. @Sarah Tee That is great that this is helping You should look into oral rehydration solutions, you can buy or make They have water and salt but also sugar and other stuff to help it be even better absorbed, or something like that. Maybe it would help more?
  11. @dancer65 Thanks for all the advice. I am young so I think that must be it. Good to know it is something that might tighten later. Can definitely feel that last stretch for the neck!
  12. @dancer65 Thanks for the advice, I looked up False Cardialgia and it sounded like an interesting idea. As I noted above, it really did feel like the pain was heart palpitations. I tried the stretch and I found a lot of soreness in whatever muscles pull the shoulder blades together, maybe that is what I need to work on next. I will have to try further for the pecs, as I could not get a stretch feeling there doing this.
  13. I get something similar when in a particularly bad flare up I find heating my core helps (even though it is my legs that are often shaking) I use an electric heat pad I also don't feel cold, but the heat still helps I find that the muscles that are shaking are sore and if I massage them the shaking improves
  14. Thanks @Pistol I am extra happy as it did not involve adding yet another med!
  15. I wanted to share that I have had great improvement with two longstanding and debilitating chest pain symptoms via self massage! the symptoms were: 1. a bad pain in the center of my chest 2. a fluttering sort of sensation in my chest I massage the muscles between the ribs (which I did not even know existed! they are used for breathing) and also right at the junction of the ribs and the sternum (center of chest). I massage these areas only for maybe 30 seconds at a time, but like a dozen times a day. I hypothesize the key here is repetition. I search for sore regions and massage them. After a week or two the soreness usually goes away (the pain/fluttering improved even sooner). Interestingly, I used to think the first pain was heart palpitations. It sort of felt like that. I guess the lesson is it can be hard to distinguish where pain is coming from. I think the fluttering must have been muscle spasms? And massaging the muscles somehow helped with that? If anyone has any questions, I am happy to answer and hope this helps somebody. I can't imagine I am the only person where the above helps. I have no expertise with massage so if you try this please be careful, not sure what sorts of risks are involved here. But it has been too helpful to not share. Edit: For the technique, I use the middle part of my thumb, right at the joint and do small circles with light to medium pressure
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